Tuesday, 10 February 2015

New Label, Same Thing

The Institute of Medicine, an American group, wants to rename CFS/ME and have declared it to be a real illness, a disease that needs serious attention.  Perhaps the most astounding thing is that there actually was a need for them to declare that patients need to be believed and not told that it is all in their heads.  The Americans are a bit late to the party, with Canada, Australia and the UK having done studies and complied reports some time ago, so to have American authorities suddenly declaring this a real and legitimate thing can be somewhat annoying but I will look past that and focus on the good news.  The US is big, loud and has money.  Does anybody know that better than Canada, their neighbour and cousin?  Now that American doctors are being urged to recognise, diagnose and support people with CFS/ME perhaps soon to be known as SEID (Systemic Exertion Intolerance Disease), perhaps now money will be put towards studying it and finding the cause and some day a cure.  At this point, if like me you are lucky enough to have knowledgeable doctors who can at least diagnose it and know it is not a psychological condition, you may or may not have experimented with various potential treatments.

There is disagreement amongst the experts, and there are too few experts in the illness, as to what treatments work best and desperate patients are at risk of at best spending money on treatments that may work for a short period of time and then stop working, or of finding some treatments that address some of the symptoms some of the time.  Although their numbers are diminishing, there are still some who condone the idea of graded exercise as a treatment but it comes with great risks.  The very nature of the illness is that exertion of any kind, physical, cognitive or emotional, puts too much stress on the body.  More than it does to a person who does not have the disease.  One of the defining symptoms is that the person with the disease is no longer able to perform physical tasks that were once easy.  The person with the disease is not able to perform tasks without experiencing profound exhaustion that is not relieved by rest.

Having lived with this disease for most of my life, I know that graded exercise does not work.  When I am in a remission stage I can perform physically, and I can even push myself to do things such as take up a vigorous sport and my ability may last a few months or even a few years if I am not pushing too hard.  Then I will crash.  I have yet to meet any exercise therapist who understands the limits and even as the afflicted person it can be very difficult to know where your own limits are.  What you can do today and tomorrow you may or may not be able to do next week.  Exercise professionals all want to take you to the next level.  Oh you can do a walk around the block comfortably now, okay you will now go round the block twice.  This is what graded exercise is, steadily doing more.  This is how you train a normal, healthy person to get fit.  This is not what you do with someone who has CFS/ME or SEID as we may eventually be calling it.  At some point this graded exercise will only result in a relapse unless the patient finds the point at which he/she is not being overtaxed and can maintain the activity level.  A maintained  activity level is not graded exercise.  I have been trying to find my maintainable level for the past thirty years.  I do not yet know what it is. I have so far, been wrong every time.

There are the vitamin pushers, the special diet enthusiasts, the oil pulling, alkaline water drinking, acupuncture enthusiasts who believe these will cure all diseases and I have had them all urged on me by well meaning people.  I have people praying to their god or goddess for me and encountered people who say to me, 'Oh yeah, I am really tired too. It must be nice not to have to work.'  If I really want to, I can find people on the internet who think I would be cured if someone just made me toughen up and stop whining.   Sadly, that is not the case and if not for my culture, time period and family, I would not be here.  I would not have survived life, not being among the fittest.  There is much I can be thankful for, despite my not believing there is a deity to thank.  Tonight I am mostly thankful that our big, loud, wealthy cousin to the south is finally getting onto this illness.  It's time for consistent diagnoses, treatment, and just plain understanding and acceptance of the disease.  It's bad enough living with it.  There is no longer any excuse for patients to be told it is all in their heads and have to deal with disbelief from family, friends, co-workers and the medical community.  Nobody who knows me can watch me and not know that my illness is real, but I am fortunate and grateful to have had medical support all along too.  Everyone with this illness should be so fortunate.

There are news reports all over the internet at this point.  Here are a few links.




 Excerpts from this site- http://america.aljazeera.com/articles/2015/2/10/institute-of-medicine--calls-for-renaming-chronic-fatigue-syndrome.html   -had me nodding my head.

...Most people with ME/CFS suffer from extreme exhaustion, made worse by even mild physical or mental effort. After a crash, known as postexertional malaise, recovery may take days or weeks, and sleep brings no relief. These symptoms are recognized as key defining characteristics of the disease, according to the new criteria. Problems with speaking, thinking and remembering, known as cognitive impairments, are also widespread among patients.
Some sufferers have good days and bad days; others are confined to bed for months or years. Many people with the disease experience severe headaches, muscle pain and sensitivity to light and noise.
“It really is a hidden illness,” said Troph. “A tricky point is that people tend to see you when you're feeling your best. When you're feeling crummy, you're hopefully home in bed.”...

And this bit succinctly states what my first reaction was when my dad called me to tell me of the news report on the committee findings.

...In a 2013 open letter to Kathleen Sebelius, the secretary of health and human services at the time, dozens of experts signed a letter stating that groups like the IOM “lack the needed expertise to develop ‘clinical diagnostic criteria’ for ME/CFS,” adding that “this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease.” They argued that a set of criteria known as the Canadian consensus criteria already give an accurate description of the disease.

Still,  as I said at the beginning of this post, if the US is going to start making noise about this disease and that leads to better understanding, funding for treatments and perhaps some day a cure, then I won't complain too much about the IOM being a bit late to the party.  A little bit.  Maybe even twice.  But mostly I am hopeful.  When you live with CFS/ME you have to be.


  1. To be honest until I met you and the other lady blogger with ME I didn't know what ME was. I had to google it first! I think this is one of the key issues here, people not knowing what the hell this disease is. And you know people feel disturbed by the unknown,so maybe that's why they act and behave in a certain manner.
    I think this is great news, I really hope they find what causes it and find a cure for it, I hope science gets a full financial injection and work this through. ^_^ So let's be hopeful together!

    1. You certainly aren't the only one. I try to be a source of information to a certain degree, though I do not want to give medical advice, obviously. I feel that afflicted people and their families need to speak out since it is always the squeaky wheel that gets the grease. The sad thing is that without the awareness and support of the medical community, some people suffer their families not being supportive or even believing them. Your hope is much appreciated, my friend! xoxo

  2. I find it interesting that our symptoms can be so similar, but from different causes. Mine from a genetic neurological deficiency, and yours from an acquired disorder.
    Both living with impaired physical and mental functioning due to system overload. In my case impaired emotional functioning too, although I don't sense that in you.
    Yay, to more research funding and more answers! You know, everyone I know who has had ME, has been very active and sporty. Interesting given the lazy tag thrown at you. xo Jazzy Jack

    1. Yes, it is interesting and it is because both of our conditions are neurological. I am endlessly fascinated by neurology and read about it often though I cannot claim to understand all of it. I don't have impaired emotional functioning but I do experience emotional overload symptoms. I have suffered from depression, I have anxiety, I get a bit off sometimes and easily emotional. It's as though I either behave emotionally excessively myself or I collapse under the weight of emotions and mental strain and have a meltdown. I will then feel guilty and apologise excessively. I am not the angry, shouting, cranky type. I also have impaired intellectual functioning which is embarrassing and frustrating. Although my condition is considered an acquired disorder the possibility remains that certain people are genetically predisposed to acquire it. It would not surprise me at all if these things are all related. xoxo

  3. As an American, I can totally relate. I don't know what our deal is. It is like: The rest of the world: We are going to do this thing that helps people, and betters our country! America: NO. Because "Murica! *Ten years later* America: Okay, I guess we are going to do the thing, but, we are going to make it sound like it was our idea, because "MURICA!

    1. LOL-Sara, now I want to be very Canadian and apologise for sounding snarky. I think this American attitude is just what happens to a big, powerful nation. It's inevitable in many ways and I know from personal experience that the US is filled with really wonderful people such as yourself. xoxo

  4. Haha! Sara, that made me laugh. So true. Silly Americans. We really are an annoying country sometimes. Hopefully, though, this will help to find the cause and even a cure someday!

  5. good news!
    as for exercise - it annoys me too that the common sense in the western world is that life is a olympiad.... you don´t have to be happy with what you have and can - you always have to push yourself for more. doing the asian exercise of yoga since ages it was the first thing i learned - no competition. not with yourself nor with others. just be. do things in harmony with your body and soul. never push.
    it was a big learning curve. we are always told to try to be better, better then others and better as our yesterday self. no time to be good.
    a physical cure is a great hope - but we have to change our minds too i think......

    1. I really agree with you, Beate! That is one of the things I like very much about yoga and even some aspects of Buddhist philosophy. It is that sort of perspective on living with chronic illness that helps me more than anything. My intention every day is to just be me, now.

      I don't expect a cure in my lifetime, and I am already fortunate to have a diagnoses and support. But I am happy for the millions of people who don't, and for even that little bit more ease it will add to my own life having a better informed public and acknowledgement of the disease. I'm sure there will still be people who think I should have a daily kale smoothie.

      Hugs back! xoxoxo

  6. Aside from politics, it's wonderful that there is something changing, it's always very exciting and hopeful. I'm happy for you! :)

    Tons of love xxxxx

    1. Thank you, dear friend! Politics creep into everything and I take full responsibility for even mentioning it here, but my honest response to the news was a mixed one so that is what I shared. Overall, I expect it to be a good thing that has happened even if there are possible critiques of it. Tons of love flying back at you! xoxo


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